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ISTSS members are likely aware that the death of a parent or caregiver in childhood can have lifelong impacts, though for context a few datapoints merit restating here. The COVID-19 pandemic put a spotlight on childhood loss around the world, highlighting areas of unmet need and knowledge gaps in bereavement care. Globally, the most recent estimates of excess COVID-19 deaths through May 1, 2022, are that 10,500,000 children are bereaved of parents and caregivers (Hillis et al. 2022). These staggering numbers have arisen against a backdrop of significant childhood bereavement even before the pandemic. For example, before 2019, estimates suggested that on average, about 4% of all youth in the U.S. had experienced the death of a parent by 18 years of age, with estimates varying widely by region (e.g. West Virginia, 11%, Colorado, 3%; Burns et al., 2020). Then, after 2019, the COVID-19 pandemic drove an estimated 17.5% to 20.2% rise in childhood parental bereavement (Kidman et al., 2021), raising alarm around what journalists have called a ‘grief pandemic’ (Szabo, 2021). This rising urgency corresponds to the emerging scientific consensus that ongoing structural inequity has driven a disproportionate burden of childhood bereavement in historically minoritized groups (Umberson et al., 2017; Cooper & Williams, 2020).
This awareness has coincided with additional urgency about a broader youth mental health crisis, echoed in the U.S. Surgeon General’s recent Advisory Report (Office of the Surgeon General, 2021). This report noted that excess parental loss due to COVID-19 is expected to disproportionately impact youth of color, who are more likely to lose a parent to COVID-19 (Hillis et al., 2021) and are at elevated risk of suicide (Bridge et al., 2018). While evidence-based interventions exist to prevent adverse consequences of parental bereavement (Boelen, Lenferink, & Spuij, 2021), significant barriers exist that this article aims to draw attention to: 1) lack of adequately powered, representative data sets on childhood bereavement; and 2) heterogeneity in the definition of childhood bereavement experiences in existing data sets. Addressing the first barrier is essential to advancing population health research on childhood bereavement, and progress on the second point will address longstanding methodological debates in trauma research more generally.

Challenges in Conducting Secondary Analyses on Childhood Bereavement in Existing Data Sets

Despite several sources of pressing calls to action, research on the lifespan consequences of youth bereavement in population-representative cohorts faces considerable challenges. Three specific challenges unique to conducting research on childhood bereavement are discussed below, including selection bias, power considerations, and time-varying sociodemographic data.
Selection bias. Longitudinal birth cohorts are enormous scientific resources to understand childhood mental health outcomes, yet enrollment and retention in these cohorts for bereaved families is impacted at two major junctions in the research pipeline:

  1. At enrollment. Families bereaved of caregivers could be less likely to enroll in studies due to resource constraints secondary to the loss of a primary caregiver.
  2. At bereavement. Families may experience both psychopathological and socioeconomic vulnerability after the loss of a major caregiver, factors which are associated with subsequent non-response and dropout. Additionally, if the enrolled parent is the primary respondent but then becomes deceased, non-response in subsequent study waves would be driven by bereavement status itself. As a result, the very children and families that are the most vulnerable are likely to have the least representation in research and existing cohort studies.

Sample size. Though highly impactful, parental loss is still a relatively low prevalence event, thus requiring very large sample sizes to reliably estimate effects in secondary data sets. This is especially problematic when seeking to identify social determinants that moderate health outcomes after childhood loss, wherein very large sample sizes are needed to conduct adequately powered interaction tests.
Time-varying socioeconomic status (SES) information. A lack of time-varying data on SES variables could risk confounding exposure-outcome association. For example, socioeconomic status, including household family income, can be directly impacted by the loss of a primary caregiver upon whom children depend. However, disentangling temporality is complicated because few studies contain time varying assessment of SES variables to fully disentangle SES variables that precede the death vs. SES changes that occur as a result of the loss.

Challenges Associated with Heterogeneity in Definition of Childhood Loss

The second barrier that we draw attention to stems from the wide variability in which childhood bereavement is ascertained in existing data sets, introducing threats to validity and reliability. This is an issue of broader concern to trauma research more generally, brought to focus most prominently by Dohrenwend in the seminal 2006 publication in Psychological Bulletin on the problem of intra-category variability in stress research. Traditional checklist methods of measuring trauma, including bereavement, can obscure the actual experiences that result in an endorsement of that event. To illustrate, a brief summary of four representative longitudinal birth cohorts wherein bereavement was ascertained (see Table 1) displays four different approaches to measuring bereavement status among youth.

Table 1 illustrates that childhood bereavement is defined with significant variability across these four cohorts. This heterogeneity in the definition of parental loss reduces generalizability and comparability across studies. There are several viable ways to define parental loss, and no single consensus definition exists in the current evidence base. This can have important unintended consequences. For example, constraining the definition of loss to the death of a biological parent, while useful for precision in the definition, could also potentially constrain assessment of bereavement in diverse family structures wherein the primary caregiver may not be a biological parent (Cross, Fomby, and Letiecq 2022).

In summary, the urgency around developing evidence-based policy, intervention, and prevention of adverse consequences of bereavement among children faces critical methodological barriers. Novel data collection based on study designs that address the aforementioned limitations of existing data sets may be crucial to advancing the scientific knowledge base on childhood bereavement. However, collecting data in birth cohorts over several years is very costly, consumes enormous resources, and asks families to volunteer significant amounts of their personal time. On the other hand, the pragmatic benefits of leveraging existing data sets to answer critical questions about youth mental health and well-being in the aftermath of familial loss are offset by considerable limitations regarding selection bias, power, confounding, and exposure ascertainment heterogeneity. Existing data sets contain information that can answer some of the most important questions facing the research and clinical community now, but only if limitations are carefully taken into account in analytical design and interpretation. Answering these questions is ultimately critical for the development of primary prevention of adverse effects of bereavement at the population level, and for effective mental health treatment at the individual level.

About the Authors

Dr. Christy Denckla is assistant professor of social and behavioral sciences at the Harvard T.H. Chan School of Public Health where her work is supported by an early career K23 award from NIMH. Her research aims to understand how adversity affects mental health and well-being across the lifespan, with a particular focus on bereavement and adaptive processes.
Ana Lucia Espinosa Dice, MA, is a research assistant in the Department of Epidemiology at the Harvard T.H. Chan School of Public Health. Under the mentorship of Drs. Karestan Koenen and Christy Denckla, Ana Lucia leads analyses that aim to better understand risk and resilience across the life course following adverse childhood experiences.


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